What is it like to have endometriosis?

March 10, 2026| Bente Hagens |3 min reading time

tl;dr

Endometriosis is not ordinary menstrual pain. In this personal story, you will read how symptoms were considered 'normal' for years, until endometriosis and PCOS were eventually diagnosed. The diagnosis brought clarity, but also new questions. The most important message: pain that interferes with your daily life should not be ignored. Take your symptoms seriously and continue seeking appropriate medical guidance.

Don't keep walking around with pain that affects your daily life; your symptoms deserve attention and serious care.

Endometriosis, the feeling that you can't breathe for a moment because of the pain or that it makes you nauseous. One week you're a fit girl, the next a helpless potato with an insatiable hunger. A few examples from the endometriosis bingo card. Recognizable to many, but not recognized by many doctors. This is how many women walk around with their own, often long, story. In this blog, our colleague Lexi tells her own story about endometriosis.

It's part of the deal, right?

For me, it started around the age of thirteen or fourteen, when I began experiencing really extreme menstrual symptoms. Still, I wasn't immediately worried about it. After all, my sister always had even worse symptoms than I did, and because we shared many of the same symptoms, it seemed 'normal' within our family. Absolutely no alarm bells went off that something might be wrong.

Later, during our puberty, around 2016, we finally went to the GP. I was prescribed the pill and advised to use Alive Feminax. That was it. No examination, no further questions, no real explanation. All complaints were reassuringly dismissed by the doctor as “just menstrual cramps.” If even the doctor says so, you have to take his word for it.

And yeah, everyone had these problems, right? So if I were “whining,” I was just being a drama queen. Mood swings during puberty aren't an uncommon phenomenon either, your parents won't let you miss too many school hours, and talking about menstruation was awkward in general.

So for years, I walked around with symptoms such as extreme abdominal and back pain, bowel problems, unwanted hair growth, and severe binge eating and crying spells. I basically bottled up all my feelings surrounding menstruation. Because, well, that was all part of it.

Spoiler: no, that is not part of it.

The redeeming word

It wasn't until 2024 that things changed. My sister started trying to conceive around that time, but getting pregnant proved difficult. That was the moment when a thorough examination was finally performed. She was referred to the Bergman Women's Clinic, where a specialized gynecologist recognized almost immediately what the problem was: PCOS and endometriosis. Because these conditions are often hereditary, I was advised to make an appointment as well. And indeed: I was also diagnosed with PCOS and endometriosis.

It is good to know what you have, and which symptoms are concerning and which are not. But that doesn't provide a ready-made solution. Endometriosis can cause your uterus to adhere to other organs and it can affect your fertility. The advice was therefore to have your period as little as possible, so that as little new tissue as possible is produced. That sounds simple, but in practice, I missed the pill every month for another year and a half.

From frustration to fear

Where I was previously mainly frustrated by my symptoms, that slowly turned into fear. Fear that my organs would stick together. Fear that my wish to have children might never become a reality. I know that this fear can sometimes feel exaggerated, but the effect on my daily life is inevitable. Because of the pain, I stay home from work, have trouble concentrating, sleep poorly, and suffer from mood swings.

Things used to be… not better

Fortunately, there is now more understanding, knowledge, and openness than in the past. For example, I can now work from home, and that provides a tremendous amount of peace—both physically and mentally. I am also more conscious of my mental state; sometimes I know that I am just feeling tearful or grumpy for a moment. And that is perfectly fine.

In addition, I am still in good contact with the Bergman Women's Clinic. They continue to think along about possible solutions and take my complaints seriously.

If I may share one piece of advice: don't walk around in pain and don't let yourself be brushed off. I can recommend every woman to seek help here and stand up for herself.

tl;dr

Endometriosis is not ordinary menstrual pain. In this personal story, you will read how symptoms were considered 'normal' for years, until endometriosis and PCOS were eventually diagnosed. The diagnosis brought clarity, but also new questions. The most important message: pain that interferes with your daily life should not be ignored. Take your symptoms seriously and continue seeking appropriate medical guidance.

Don't keep walking around with pain that affects your daily life; your symptoms deserve attention and serious care.

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Endometriosis is a condition in which tissue resembling the uterine lining grows outside the uterus, for example on the ovaries or intestines. This tissue responds to hormonal fluctuations, which can lead to pain, inflammation, and adhesions. The severity varies from person to person: some women have mild symptoms, while others experience severe pain and fertility problems.

Severe menstrual pain that disrupts your daily life is not a normal minor issue. Signs may include chronic abdominal or back pain, pain during bowel movements, fatigue, or fertility problems. Only a doctor can make a diagnosis, often via ultrasound, MRI, or laparoscopy. Keep insisting if symptoms persist and you feel you are not being taken seriously.

There appears to be a hereditary component. When endometriosis occurs in a mother or sister, there is a greater chance that other female family members also have it. This does not automatically mean that this is the case, but it can be a reason to be alert for symptoms and seek medical advice in a timely manner.

There is currently no definitive cure for endometriosis. Treatment focuses on reducing symptoms and inhibiting tissue growth, for example with hormonal therapy or sometimes surgery. The appropriate approach varies from person to person and depends on symptoms, life stage, and any desire to have children.